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One hundred percent of the proceeds from the sale of this book will benefit the Who Is Carter Foundation, which fully funds The Brain Possible. Both organizations support differently-abled children and their families.

Connect with Us: The stories in this compilation and others like them—along with resources, articles, and other tools for parents—can be found at thebrainpossible.com. To connect specifically with the stories included in this book, visit thebrainpossible.com/more-than-a-diagnosis.

A Note to Our Community: In this book, you will not find the term “special needs” outside of direct quotes. That’s because at The Brain Possible, our goal is to change the conversation around childhood brain injury from one of limitations to one of hope and possibility. We prefer to use “differently-abled,” as it feels more empowering and authentic to our mission. Anytime we can drop a label, we go for it.

That said, we know many parents and caregivers embrace the term “special needs,” and we certainly respect that decision.

We believe all children are beautiful and—yes—special. And differently-abled. Both are true, and we are all in this together.

Disclaimer: The Brain Possible does not provide medical advice, diagnosis, or treatment recommendations. It does provide resources, information, and hope.

To all the parents and children I have met along this journey, and to all I have yet to meet as I continue this project in the future. Your stories have both broken my heart into pieces and filled it with awe and joy. Thank you for who you are and how you move through the world—and most of all, thank you for letting me glimpse a small part of your overwhelming will and overwhelming love. You have and will continue to change me.

To every mother, father, stepparent, grandparent, sibling—any family, chosen or biological—of a child who is differently-abled. Or any child, for that matter. This ‘“raising kids’” thing is hard, and it is filled with such beauty. I didn’t use “but” for a reason because the two are not mutually exclusive. Know that I see you, and this book is for you, too.

To every child, no matter your circumstance. I think you are wonderful just as you are, and I am so thankful you’re here.

Finally, to my daughters, Ella and Emmylou. You’re little now, but what I always tell you is true even (and especially) as you grow: anytime you don’t know what to do, simply pick the kind thing. Every. Single. Time. Keep being inclusive and doing what’s right as you branch out there in the big, wild world. I know you will. I love you.

Contents

Foreword

Introduction

Gabe’s Story

Cooper’s Story

Piper’s Story

Sammy’s Story

Laird’s Story

Ashley’s Story

Soskay’s Story

Ryan’s Story

Evelyn’s Story

Caden’s Story

Beau’s Story

Ryland’s Story

Jaden’s Story

Brayden’s Story

Dierks’ Story

Grayden’s Story

Acknowledgments

About the Author

Foreword

By Emily Abbott

April 22, 2020

When my husband Matt and I lost our son Carter at only twenty months old to complications from a brain injury he sustained as a newborn, we vowed to carry on his spirit of hope and joy. One piece of that has been forming The Brain Possible, a foundation that provides resources, information, and hope to families like yours.

I learned a lot during and after my too-short but beautiful journey with my son. One of the most important cornerstones, for me, was to find people who have walked this road before. I know firsthand that having a child with a complex condition means that you—parents and caregivers—may need to step into a new version of yourselves. You have more of an opportunity to become researchers, advocates, therapists, cheerleaders, influencers, citizen scientists, and warriors. This is a job that can push you to your limits. It may cause many sleepless nights, adrenal fatigue, and sometimes even isolation.

My point? We need each other.

The one thing that helped me find direction, answers, and the strength to step into my new role—which I readily admit was not easy, as I did (and sometimes still do) have moments of shock and grief—was hearing from other families. First, there was seeing the beauty in other people’s circumstances like mine. Then came the hope that I could do this because other people before me have done it and continue to do it every day. I learned that there is no reason we have to be alone and think about every challenge coming at us as if we are the first ones faced with them, putting in the extra work to build therapeutic and home/life solutions from scratch. We do not always need to reinvent the wheel when we can find out what has (and hasn’t) worked for others.

That is where the magic is: in finding connection and support from other families who have walked even a mile ahead of you. By sharing the stories you are about to read, these families are helping so many who are seeking, grieving, feeling lost, and facing complex diagnoses.

In my listening of other people’s stories, I also woke up to how we are all connected in this life. I learned how common so many neurological conditions are. I learned that bad things do happen to good people, every single day. I learned that there is so much that I don’t know and I should know, and I became thirsty for information and for ways to do and be better.

I became drawn to families who chose to look beyond their child’s diagnosis. In fact, I began to seek out those families pushing the limitations and carving out full, beautiful lives for themselves and their families. Families who didn’t focus on what they were told their child would never do, but instead wondered what they could do. Families who put blinders on to the noise of gloom and doom, of negative predictions or assumptions. Those were my people. Those still are my people. I was forever changed, I ascended into a new and evolved version of myself. Empowered. Strong. Resilient. Informed. Knowledgeable. Ready to share all of that with you.

I believe in miracles because I have seen them in others. I don’t pay attention to what the odds are. Miracles, by definition, defy reason, and I’m proud to live my life unreasonably. I have no room for limitations or labels, and I’m inspired by others who embody this belief as well. There is beauty in our children. There is beauty in our circumstances. Read these stories, hear from our community, and be changed.

Introduction

During one of the interviews for this book, I was a bit late because I had a meeting at my oldest daughter’s school to discuss her Individualized Education Program (IEP)—a simple one for a stutter, nothing else. Certainly nothing major.

When I finally got on the phone, I quickly apologized for my tardiness, gave my reasoning, and tried to jump into the interview to make up time. But the mother on the other end of the line would not let me. Instead, she asked about my daughter. She said a stutter sounded hard for a little girl coming into her own socially. She asked questions. All this when we were about to dive into her experience with her daughter’s significant brain injury, the gravity of the issue on a different level, by all rights.

I had a meeting about my daughter’s stutter while her daughter may never speak, and she wanted to talk about how I felt? She wanted to hold space for me and listen? I was flabbergasted. This wasn’t apples to oranges. These orchards were on different planets. When I brought that up, she dismissed my pushback, saying, “It all counts.”

This example embodies a grace and an unyielding acceptance that I have experienced over and over again when speaking with the many families for the More than a Diagnosis project—one we initially titled Stories of Hope. Over the course of a year and change (so far), I interviewed mothers and fathers who astounded me with both their strength and their softness. With their willingness to share their stories with me—a stranger to them, in those early meetings—knowing at the time only that doing so may help someone else navigate a challenging diagnosis. That’s it. Their children have cerebral palsy, autism, cystic fibrosis, dyslexia, spina bifida, Down syndrome, epilepsy, rare genetic conditions, traumatic brain injuries, or severe complications from brain-damaging viruses—I could go on.

And yet.

They took the time, that precious time, to share with me. They told me about their lowest lows, about seeing devastating test results, about how it hurt when people averted their eyes on the street, about their worries for the future. And we cried. They also told me about miraculous advancements their children had made, about their pride, about what gifts their children are. And we cried some more.

There is no tangible reward in that, in baring your sorrow and your truth and your beauty. But they did it. I was warmed during each conversation—even moreso because, throughout this project, the common refrain has been one of gratitude for simple moments. For not what these parents have been able to teach their children, but the other way around.

This Book is Not Mine

I am an advocate for the differently-abled community and editorial chair at The Brain Possible, a nonprofit that provides resources and hope for families of children faced with challenging diagnoses. I am also a writer with a passion for personal narratives and a person with a passion for helping people share stories that matter. It was logical to combine these, so the seeds of the More than a Diagnosis project were sown. What was (and still is) an ongoing blog series profiling children who are differently-abled and their families has bloomed into this book. Who knows? Maybe one day we’ll have a whole garden.

While it is true that I have written each of the stories in this book, this is decidedly not my story. I composed these profiles directly from personal interviews I conducted with each of the families included here, and they have graciously allowed me to share them with the world. This is their book, not mine. It belongs to these families and the entire differently-abled community. The bottom line? This is a collection of stories that deserve to be told, and I am so grateful for having the chance to have heard them firsthand.

That’s a big reason why 100 percent of the proceeds from the sale of this book will go to Who Is Carter, the parent and funding foundation for The Brain Possible.

It has been my honor to learn from these families and help them share their authentic journeys, both the dim parts and those filled with such light. My hope is that the funding from the sale of this book will help us reach more families and ensure I am able to continue More than a Diagnosis for as long as there are hopeful stories to be told. Which, if you ask me, will be forever.

Forward Together

At the end of the day, just as that mother reminded me when she asked about my daughter on the phone all those months ago, so much softens when we see others not as in comparison to us but as simply people. When we treat them that way. When we actively reject that anything has to be a competition, we can see every mother and father, every baby and teen, for who they are regardless of diagnoses or labels: worthy of our love and kindness and care, and nothing less. No matter what.

In Ben Lerner’s novel The Topeka School, we meet a character who often quasi-quotes Danish physicist, Niels Bohr, specifically, his theory that states:

“The opposite of a truth is a falsehood; but the opposite of a profound truth…may be another profound truth…if I assert it’s August when it isn’t—simply false; but if I say that life is pain, that is true, profoundly so; so, too, that life is joy; the more profound the statement, the more reversible…”

It’s that last sentence in this passage that has stuck with me—the piece about reversibility. I have never claimed to “know what it’s like” for the families I speak with for this project on a daily basis. I do not know for certain the reversible profound truths families with children who are differently-abled hold. That said, from our conversations, I might be able to loosely ballpark those profound truths somewhere in the neighborhoods that house two big ones: fear and hope.

I don’t have to understand what it’s like at the intersection of the two to recognize that it exists. That it’s sometimes beautiful and sometimes hard and at all times human. To hold space for it. To ask questions. To admit that I will never “get it” and—rather than turn my back or avert my eyes—to listen all the harder for it.

Listening hard for this project has and continues to be one of my most heartbreaking and heartbuilding endeavors. Nothing has ever been more worth it. I firmly believe we are all better if we move forward together, and this is my way of doing that.

In the spirit of moving forward together, if you’d like to connect specifically with the stories and families included in this book, please join us at thebrainpossible.com/more-than-a-diagnosis. We’ll be waiting for you.

However you have found your way to this book, I hope you leave it with this, as Anna Enos (Sammy’s mother whom you’ll meet later in the book) told me once on the phone, “Hope is a religion in this house.” So, I would say, is opening your heart and listening. Because when one child or one family wins, we all do.

It all counts.